Living With Lupus

It’s easy to greet Ebony Sykes, receive the warmth of her smile, and believe she’s having a normal day. Yet her normal, albeit a good day, may have included her husband helping her into the shower and her 9-year-old son grabbing her shoes from under the bed for her.Her normal is different, living with lupus. Ebony was diagnosed with the autoimmune disease at the age of 24. With lupus, the human body has difficulty differentiating between foreign tissue and necessary tissue. In return, the body attacks itself. Soft tissues to organs may be attacked; anything from the skin to joints to the heart and kidneys are commonly affected.

To diagnose lupus, a combination of factors are taken into consideration, like extreme fatigue and joint pain. Ebony and others may take a mixture of steroids, anti-malarial drugs, and amino-suppressants to treat it medically.

“At some point, you have to come to terms with it,” says Ebony. “The first hurdle for me was, ‘Why me?’”

Eventually, that led her to re-ask herself in a more positive light, ‘Why not me?’ That, she says, moved her from a perspective of victimization to one of purpose. Once she settled on that, she started noticing beautiful changes in the people around her that would not have happened had she not endured her condition.

“So [in] every day and every situation,” says Ebony, “I try to figure out why I ran across it. Is it for me? Is it for someone else? What am I supposed to do with this?”

It’s not about her, nor is this condition her fault. She no longer carries the disappointment of others regarding her limitations. She keeps supportive people around her, her mother being foremost. “She’s my ‘person,’ as they say on Grey’s Anatomy,” Ebony says with a smile.

She is grateful for how proactive her family remains. Being a part of an online support group also helps, in addition to having an accommodating employer.

“Find your people,” she says. “It’s the most important thing. Find somebody who can process this with you emotionally.”

For her, that also included not going to doctors’ visits alone. That support is crucial as Ebony lives her life as a pastor’s wife and also has a 9-month-old baby at home.

Stress-reducing activities such as yoga, swimming, and massages help minimize her flare-ups. She also avoids eating beef or pork after noticing her body’s reactions afterwards.

“You don’t know what that threshold is like until it gets pushed and pushed,” says Ebony. “I have seen my body get pushed to crazy, crazy places and not break and not give up. It is the awesomeness of God and I’ve witnessed it myself… the secret is the miracle that is the human body.”